Activities of the ECD Global Alliance

  • Host an annual International ECD Patient and Family Gathering


  • Host an annual International ECD Medical Symposium
  • Collaborate with ECD Care Centers internationally
  • Hold regular online chat sessions to allow those affected by ECD to share information and provide mutual support
  • Maintain a website dedicated to ECD
  • Advocate on behalf of ECD patients to other support organizations, doctors, and lawmakers
  • Talk with researchers about ECD and advocate for research into the disease
  • Publish a newsletter devoted to stories and information of interest to those affected by ECD
  • Engage in social media to increase awareness and provide support via Facebook, Twitter, and Rareconnect
  • Provide researchers with a communication mechanism to quickly reach ECD patients

Last updated: June 1, 2017

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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Copyright 2018. All rights Reserved ECD GLOBAL ALLIANCE. A 501(c)(3) organization